coltonsmom Posted June 20, 2013 Report Share Posted June 20, 2013 Hi Everyone, Here is what happened last week...trying to figure it all out. DS (age 4) woke up at 3 pm from a nap last Monday and started some strange behavior. He would thrust out an arm like he was saying ‘stop’. Then it was both arms. By 6 pm, when I got home, he would have to stop what he was doing to do this. From what my family said it seemed to be getting more frequent. By the time we finished dinner it was pretty obvious that he was not right. We called the pediatrician who said to bring him to the ER. I was lucky enough to video tape these ‘movements’ while we were waiting (5 hours). They were happening almost constantly and were very exaggerated. He had to touch every surface he came up to or sat on, he was bending down and almost scooping up at the floor and, of course, still saying stop and hello with his arms in some weird repetition. If anyone has ever seen ‘can’t buy me love’ with Patrick Dempsey, it was almost like the dance in that. After a CAT scan and blood work they sent us on our way. There was no sign of head trauma. We were told to follow up with the pediatrician the next day and possibly meet with a neurologist. The next dayhe woke up and for a little while seemed much better. We had our appointment at the pediatrician and when he saw him he said he has ‘Tics’ and made it seem like no big deal. We mentioned that another family member had just had something similar happen and it was related to STREP, the doctor dismissed this and again said it was no big deal. I showed him the video clips I took, he got a little more serious and called them ‘alarming’… We were off to a pediatric neurologist to have an EEG. This was to see if he was having any kind of seizure activity. It did not look like a seizure, but the doctor said they can come in many forms. The rest of Tuesday was OK. He was very happy, always alert, but consistently flapping about. DS also seemed to not be able to relax…he was always moving. That night it took us about 45 minutes to get his arms and legs to stop flapping for him to go to bed. Wednesday morning came. Still smiling and happy, the flapping or ‘tics’ started immediately. We tried to keep him busy as we thought this helped, but by now he couldn’t even ride his bike because of the movements. I got a call from the pediatrician who read us the report from the EEG. There was abnormal activity in his frontal left lobe…possible seizure activity. We had an appointment on Monday to follow up with the neurologist. We were told to just look for any changes or worsening. Well, by this point he was having his whole little body tense up and he told me he was just cold. After another call to the pediatrician we were told to go to Hospital. The movements were not supposed to be a constant occurrence. My little man was admitted to Hospital Wednesday for uncontrolled body movements. Thank God for those videos. He could pass all the neurological ‘field’ assessments. But all the doctor’s were completely shocked by his movements and constant tics. We met with about 6 different doctors before the Pediatric Neurologist came in. He instantly said this was a tic disorder, not seizure activity. He asked us some questions and we realized that he may have had some tics prior to all this. We were pretty dumbfounded at this point, because the first report said there was seizure activity. He had an overnight EEG, more blood work, 2 EKGs and an MRI. We kept pushing this STREP thing, but it was brushed off and we were told that he had strep too long ago for this to be a reaction. he had an entire day of constant tics. Some worse than others. They did not even stop until he was asleep for about 2 hours. At about 11:30 pm, another doctor came in saying that he had to have his 2nd EKG. He was asleep so we were not thrilled with this, but she said it was because his STREP titers were elevated and that we had to make sure there was no swelling around his heart. We had a sigh of relief that maybe this was just caused by the strep. By Thursday morning it seemed like we were just having all these test done with no outcome. No one else mentioned the STREP until we asked. We were told they were not actually elevated. Then when he had his MRI, he woke up in the tunnel. It was not by best moment when I was told that. The neurologist reviewed the MRI and the EEG and said that everything was normal. Although his tics were ‘odd’ he was diagnosed with a tic disorder. We were discharged Thursday night with a few blood tests left to come back, which we were assured they would be fine. We had the task of deciding to medicate and just coming to terms with this change. At this point I was still upset, but after looking around the hospital felt pretty lucky. We had a great weekend. His ‘tics’ seemed to get much better and we were pretty relieved. We had a follow up with the pediatrician on Monday. We asked again about the STREP (my sister now has it) and the doctor initially blew it off. Come to find out the 2nd STREP antibody test (DNASE came back EXTREMELY elevated. About 20 times the normal amount (1480). We asked the pediatrician about PANDAS (pediatric autoimmune neurological disorder associated with STREP) and he only knew what he read about it. He did not brush us off, but had to contact the neurologist and the infectious disease doctor. He has never treated it. We asked for a long course of antibiotics and at that point he was going to see how to handle it. About an hour later I got a call from him that the neurologist said DO NOT treat for PANDAS and that they want us to go to a Movement Disorder Specialist in Charleston. Both the pediatrician and the neuro say his tics seem 'choreiform' like. But this is not Chorea??? The appointment is not until sometime in August. And from what we gather is to rule out a tic disorder, which is his current diagnosis?!?!? Right now we are still waiting to see if he has an active case of STREP without symptoms…he could be a carrier (which I think I might have joked about a few months back…little did I know). UPDATE: Strep culture is negative. From what Google has taught me, PANDAS is pretty controversial. Some believe in it and some don’t. Right now I think I do, my little man went from 0-100 in less than a day. We are waiting for an answer as to why his levels are so high and what is the harm in some antibiotics, but we can’t seem to get that just yet. We have been lucky to have some friends who have heard of it and have doctors who treat it. We are going to try and get him in ASAP. I can’t say 100% that it is PANDAS but I can’t say it is not. Something was definitely triggered. He tries to cover his movements up a little bit but that seems to be the worst. From where we were last Wednesday and Thursday, I would say it is about 50-75% better. He still has all the tics, and there are a lot, but they are not constant. Looking back, DS has been clearing his throat for a few months, we thought it was just a habit, but maybe not. He also does not like to be too far from home. Anywhere we go he wants to know how far we are from our house. It does not affect his mood, he just asks. He went through a couple of weeks of wanting to wash his hands after he touched his nose, and would cry about it, but that seems to have passed. Any help would be appreciated! Thanks! Link to comment Share on other sites More sharing options...
peglem Posted June 20, 2013 Report Share Posted June 20, 2013 (edited) Sounds like PANDAS/PANS to me, but, of course, nobody here can dx your child. Try to find a doctor who is familiar with treating PANS and see what they think. In the mean time you could try dosing with ibuprofen to see if that helps, and see if you can score some antibiotics. Good move getting the movements on film! Edited June 20, 2013 by peglem Link to comment Share on other sites More sharing options...
peglem Posted June 20, 2013 Report Share Posted June 20, 2013 This may be helpful to you: http://www.latitudes.org/forums/index.php?showtopic=6265 Link to comment Share on other sites More sharing options...
Missmom Posted June 20, 2013 Report Share Posted June 20, 2013 You could call the NIMH and talk to them. They are actually doing a clinical trial, but not sure if you son is old enough. It could not hurt to call. It definitely sounds like pandas to me though. Good luck. Link to comment Share on other sites More sharing options...
NYCMom Posted June 21, 2013 Report Share Posted June 21, 2013 Throat clearing was also one of our first symptoms. Came before what I considered to be sudden onset. Link to comment Share on other sites More sharing options...
coltonsmom Posted June 21, 2013 Author Report Share Posted June 21, 2013 Thanks for the responses. One our our friends actually sees a neurologist that believes in PANDAS (Dr. Corbier in Concord, NC) I read that he is not really big on antibiotics, but he was given a quick recap of DSs situation and thought it might be PANDAS. We are not going to be able to get in with him for a while. I can try to get in with the other doc at that office. I guess my questions are: Should I be trying to get him antibiotics ASAP (another family members doc said they would put him on) I think I can do this while waiting for the appointment in Charleston or w/ Dr. Corbier or should I just wait for a specialist to see him that is open to PANDAS. Any thoughts will help. Also, has anyone gone to a pediatric neurologist that specializes in movements dissorders??? It seems scary to me, but if it is a good choice then I am all for it. Thanks again. Link to comment Share on other sites More sharing options...
coltonsmom Posted June 21, 2013 Author Report Share Posted June 21, 2013 One more insight, I guess... DS had the MMR 6 days before the tics started. Could this have been a trigger? This was his first MMR. Thanks. Link to comment Share on other sites More sharing options...
WorriedDADNMOM Posted June 21, 2013 Report Share Posted June 21, 2013 Hi Colton's Mom......Pandas??? In a word "PROBABLY". Your story is very similar to ours. As for the MMR, I would say yes to that too. But at this point, you need good problem solving solutions. A doc that will look at your kiddos overall health. We were "encouraged" to get the whole Ped Neur, Infectious disease doc, 'On our team"......I felt it was a crock and we did our own thing by seeking alternative treatments. Longer term abx are or should be part of the picture. But so should helping the body heal and deal with infection and inflammation. I would try to find a Integrative Ped or DAN doc. PM me if you need further info. Stay encouraged as you have got this early to get early intervention. Your ahead of the game since your early and here on this board where you can arm your self with info. Link to comment Share on other sites More sharing options...
rowingmom Posted June 21, 2013 Report Share Posted June 21, 2013 As I recall, several parents have mentioned vaccinations being the obvious tigger for their children's PANS reactions. Just my idea, but I think underlying infections react to the vaccination in some way, producing the brain inflammation. Our DD lost speech and fine motor/spatial ability with her first MMR. Makes you wonder about the causes of autism, doesn't it? I would try to get in with one of the PANDAS specialists mentioned on this board: Dr T, Dr B, Dr L. Or as suggested earlier, try getting into the NIMH trial. I don't think anyone here has found lasting symptom resolution with short-term abx treatment. Link to comment Share on other sites More sharing options...
coltonsmom Posted June 24, 2013 Author Report Share Posted June 24, 2013 Two weeks from our first 'tic' and he seems much better. His tics are not all day long. That seemed to last the first 3 days. Each day thereafter got better. Is this what is meant by episodic. Now they mostly happen when he is tired. We are waiting to test his titers again (I think we have to wait 2 more weeks), and just trying to find the best doctor fit for us. Link to comment Share on other sites More sharing options...
Dedee Posted June 24, 2013 Report Share Posted June 24, 2013 (edited) You absolutely need to see a PANS specialist. Even if things get better with this episode it's only a matter of time before you see this rear it's head again. JMHO. Dedee Edited June 24, 2013 by Dedee Link to comment Share on other sites More sharing options...
T_Anna Posted June 25, 2013 Report Share Posted June 25, 2013 (edited) If you can, I would try Augmentin. At least you would be doing something while you are waiting. T.Anna Edited June 25, 2013 by T.Anna Link to comment Share on other sites More sharing options...
coltonsmom Posted June 25, 2013 Author Report Share Posted June 25, 2013 We live near Charlotte and were recommended to Dr. Corbier. I don't think we can get in until August. We can see Maeve O Connor, who works on his team. She is an allergist, immunologist.His name was listed on a link. Does anyone have experience in the Charlotte area?? Thanks. Link to comment Share on other sites More sharing options...
coltonsmom Posted June 25, 2013 Author Report Share Posted June 25, 2013 He is also allergic to Augmentin:( anything in the Penicillin family. Our ped said he would continue treatment, but will not start it (as he has never treated it). We can see a family members doctor...who would start treatment. I just was not sure if I should get with a doctor we would stay with... Link to comment Share on other sites More sharing options...
airial95 Posted June 25, 2013 Report Share Posted June 25, 2013 I would go to the friend's doctor who is willing to start abx. My daughter is allergic to penicillin and has done cefdinir, azith and rifampin with no problems. The side effects from a trial course of abx are minimal compared to other treatments for "tic disorder" so I would try it as soon as you can find a doctor to rx. My son also woke up from a nap (at 19 months old) a different child, rages, violence, OCD, etc... When we finally realized this wasn't the "terrible twos" our pediatrician decided to try a 30 day course of abx (azith) "just to see what happens". We were still referred to neurology and ped psych - but as you have experienced it takes months to get into those appointments. Our ped's opinion was that the abx couldn't "hurt" and it was worth trying while we were waiting. The effects were almost immediate. We never even went to the ped psych because the effects of the abx were indisputable. The reality is, that for most kids, the quicker they can start treatment, the easier and more fully they can recover. We waited 6 months to look for a solution to my son's issues and he is 5 now, and we still struggle with him (IVIG has seemed to work really well for us). My daughter on the other hand, also has PANDAS, but was being treated with a 30 day course of abx every time she tested + for strep prior to onset (because of my son), so her symptoms have historically been more mild, and she sees a full recovery between strep infections. Link to comment Share on other sites More sharing options...
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